Sit Down Before Reading, A Memoir by Dave Bexfield
At about 10:15 the evening of September 25, 2005, I went to the bathroom mirror and smiled. The biggest smile I could muster. Odd. Only the right side of my face didn’t smile back. It couldn’t be a stroke at 37, could it? I worked out daily and was in brilliant shape. Even though I had a few more baseball highlights to watch, I kissed Laura goodnight, told her not to worry, and drove off to the emergency room. It’s not unusual for me to injure myself exercising, so I wasn’t concerned. A pinched nerve, probably. Only later did I find out that most people in my shoes experiencing odd neurological symptoms out of the blue also expect it to be a pinched nerve.
The ER doc, who was about my age and newly out of med school, told me I was not having a stroke—whew—but that he suspected multiple sclerosis. Meanwhile, I suspected he needed to go back to med school to learn more about pinched nerves. But those two words—multiple sclerosis—bit back.
Those first few weeks I shed 10 pounds. Laura struggled mightily. She was justifiably distraught, everything clear about our lives had in a moment turned to a strangling, bewildering fog. The internet foretold doom, but I couldn’t look away. Mornings bled to evenings, days of the week turned meaningless, as I searched for answers. For hope. The prospect of getting diagnosed with an uncurable, progressive disease spilled out into my journal like the horror story that it was.
Oct 17, 2005. Chest still numb. Relatively bad day since I started doing searches on the internet. MS seems like a very real possibility, and I am trying to get myself prepared if that is the case. Resigned…
As test results trickled in, the days crashed together. A living nightmare without the cleansing dawn. I held onto Laura harder than ever to keep from drowning.
Oct. 20-21, 2005. FUCK! MRI back and the results are bad. MS. Thank God Laura was with me… I could not have done it without her. Got spinal tap to rule out other options but MS is 99 percent. I’m going to pass out. Brain spinning. Starting to tell friends. Broke down with Peter. I don’t want to hurt Laura this way. She is my every breath. I cry as I write this. I wish it were a dream.
Getting diagnosed with multiple sclerosis, or any other serious disease, typically falls into one of two categories. Either you experience relief that you finally have answers to those strange symptoms after all these years. Or you freak the hell out. I fell into the latter category. Big time.
Oct. 22 & 24, 2005. Trying not to freak out, but impossible. I won’t lie—suicide thoughts pop into head. I won’t act, but still. Nauseous from the lumbar puncture. My days soar from being content to crying for hours. Try to get some work done, but brain diverts every time. I’ve got to fix this negative attitude for Laura’s sake.
I had unwittingly entered the octagon to face off against the five stages of grief mano a mano. Dave v. DABDA: denial, anger, bargaining, depression, acceptance. Spoiler: it wasn’t pretty. It never is. Denial worked wonders for a couple days until it became pretty clear it wasn’t a pinched nerve or something a course of antibiotics would fix up in a jiff.
Oct. 27, 2005. Brain starting to accept MS, but still hope that the phone will ring with “come in now, we need you on antibiotics, just a false alarm.” Silly, I know it won’t happen. 37 great years, hope for many more.
Anger threw me an arm bar and had me tapping out in less than a week. Repeatedly pounding on the carpet only hurt my hands. Bargaining? Urg, I had no chips to bargain with. Depression had me throwing a rager of a pity party, but then I discovered few people like going to pity parties since they are tremendous buzz kills. That just left acceptance. Acceptance of the inevitable. I cycled through the stages of DABDA quicker than most. It can take years. It had been barely a month since the attack, yet my medical chart was primed to be branded with two scarlet letters: M and S.
Oct. 31-Nov. 1, 2005. MS VIRTUALLY CONFIRMED. Tap results (and blood tests) removed everything except rare disease (Devic’s). Sad. Small amount of hope it was something else, but really, I knew better. Don't know if RRMS. Brain, self, surprisingly calm. I’m just ready to begin treatment as soon as possible. I’ve got to do that for Laura—she deserves that I try as hard as possible both mentally and physically.
As I flipped through those earlier carefree months of my 2005 journal, the pages were heavy with active passions that systematically would be all but erased in the coming years. I played tennis, basketball, baseball, soccer, often in the same week. I was a snowboarder, a bicyclist, a hiker. The “last times” that had already occurred that year were sobering. The last time I played tennis with friends, crushed a baseball, played Dad in racquetball, went mountain biking, strapped on a backpack. The last time I ever ran, the afternoon of September 25, 2005.
Over the years, last times piled up like autumn leaves cornered by a chain-link fence. I remember vividly my last run on a snowboard, carving fresh powder on a trail named Tranquility. The last time I traveled overseas. Used chopsticks. Flew on a plane. Slept in a bed outside my home. Went shopping. Got off the floor without help. Dressed myself. The last time I took a step.
It’s hard to comprehend just how much gets stolen from your life when you have a disability that menacingly progresses at a pace just shy of alarming. The next day might not be so bad, you repeatedly tell yourself. That gets you through to tomorrow and the tomorrow after that tomorrow. But sometimes it overwhelms even the most optimistic, when the disease rumbles at you like an angry water buffalo in the Kenyan outback.
Water buffaloes are among the most dangerous of all animals in Africa. There’s a reason they have the cheery nicknames “black death” and “widow maker.” We jump forward, to the summer of 2020. When things were again feeling off. Really off. The water buffalo was snorting. And I was getting frightened.
Beware the Water Buffalo
While I was tramping through the Kenyan bush nearly 30 years ago with my new wife, our safari guide (pictured) gave our small group specific instructions as to what to do if we encountered certain dangerous animals. “If an elephant charges our crew, everyone has to scatter—they won’t bother to chase a lone person.” In my head I mapped out what direction I would run and what I would do if my wife tried to team up with me. (Scold Laura nicely, and then run the other way.) Our guide continued. “If a rhinoceros charges you, run in a zigzag pattern to confuse them—their eyesight is not so good.” I mentally prepared for the situation, virtually dashing right then left. “And finally, if a Cape buffalo turns on you, get down on your knees. And pray… that your last will and testament is up to date.”
That last tip basically summed up our current situation. As our first pandemic summer started unfolding, Laura and I watched in unspoken horror as my disease marched with a ferocity we hadn’t seen since the fall of 2009, when I collected disability points like people hoarding Beanie Babies in the ‘80s. Those months before my 2010 stem cell transplant, which temporarily put a hard brake on my progression, were marked by a spate of stubborn urinary tract infections that kept returning. And returning.
It was happening again. Only now there was no stem cell transplant to rescue me. Whatever plan we had for our future was being rewritten almost daily.
We scrambled for air as my suffocating disease tightened its grip. I could no longer safely get into either of our vehicles, so we quickly ordered a wheelchair-accessible minivan just to be able to get to doctor’s appointments. And with my MS bladder now even more unpredictable, we added a portable toilet to our van’s arsenal. Alas, even that toilet was unusable without some tweaking—it sat too low. So we also toted a bedside commode with armrests that we placed over said toilet.
I had hoped my new wheels, despite its anemic radio with bass so poor that Megan Thee Stallion sounded more like Meg the Shetland Pony, were going to spell a newfound sense of freedom, but no. The ramp was too steep for me to manage solo with my manual wheelchair due to my weakening arms. I always needed assistance. Besides, the mere act of transferring from my wheelchair to either front seat was challenging: I couldn’t boost my rear end over the side bolsters, my feet got trapped among the seat supports, and my legs refused to move without help. Laura for the win. Again and again. And again.
The Disability Freefall
I’d never been skydiving, but the concept of freefalling was now no longer a foreign one as I waved goodbye to so many of my remaining abilities. My handwriting had base-jumped off a cliff and forgotten to bring a parachute. (At best, maybe someone could still decipher my signature, ish?) Laura was now doing virtually all of the cooking as she deemed that knife work was getting too dangerous for me. I couldn’t argue, so I just told jokes. About nine-fingered husbands. (Those jokes predictably landed with a thud. The sound, incidentally, a severed finger makes when it hits the tile floor. So I stopped telling those jokes.)
Getting on and off the couch became impossible, so we purchased risers for the couch legs to make it less impossible. Getting on and off the toilet became impossible, so we installed a riser and more grab bars, turning our commode area into a mini jungle gym. Getting on and off the floor became impossible, so we acquired a portable battery-powered lift to avoid getting to know members of the fire department on a first-name basis.
As my body grew progressively weaker, my bladder grew progressively ornerier. By the time the calendar flipped to 2021, UTIs were arriving monthly and for sheer convenience I stopped wearing pants. And underwear. Which meant that every time the UPS dude rang the doorbell there was an immediate three-alarm fire in our household. Other than antibiotics, which blissfully calmed everything down temporarily, we threw myriad medications at the issue, from oxybutynin to desmopressin acetate, the nasal spray that shuts down urine production for 8 or more hours. “It will trick your body into thinking it’s trekking across the desert and needs to conserve every drop of liquid,” my neuro told me. So occasionally I was able to sleep through the night. Celebrate the little things.
Along with my steady diet of UTIs (the least recommended MS diet of all time), a rather recent symptom was getting increasingly bothersome: swollen ankles and feet. They started swelling after I began using a wheelchair fulltime in 2018, but by the summer of 2020 they were out of control. My feet looked as though someone had inflated them as one might blow up a balloon poodle. I was almost afraid to ask Laura to trim my toenails lest the clippers accidentally puncture a bulbous appendage, triggering a foot to swirl around wildly as it suddenly deflated. To contain the swelling, I elevated my icy cold feet and legs for hours every day and often wore compression socks; neither helped much. But it did get me out of doing the dishes at times. Bonus?
Finally, by the spring of 2021, the UTIs became slightly less frequent. Maybe the low-dose antibiotic was actually helping? Maybe the “well-what-do-you-have-to-lose” supplements were doing something? Maybe the tide was turning? It could not have come soon enough.
I’d been off MS medications for over a year at that point, trying to wash the latest unsuccessful drug out of my system so the Covid-19 vaccine could be more effective. Laura and I were eager to restart treatment with a new medication, one of the few types left I hadn’t tried. Like all the others before it, we were optimistic.
With the bladder infections appearing to wane, there was no time to waste. The window had to be now. And with my disability roaring like a Category 5 hurricane, we needed to take advantage as it drifted offshore. Perhaps this was finally the treatment that would work after the six previous ones—a cornucopia of injectables, pills, infusions, and transplants—had failed. The seventh try had to be the charm. Sevens are lucky, right?
Then we discovered that our weather forecast was wrong. We weren’t dealing with the scattered remnants of a Cat 5 as it moved back out to sea. We were in its eye. The storm’s full force was about to blindside us.
No, no, oh God no.